Dyspareunia (Painful Intercourse)

[Cooper]

I don't really have anyone to talk to about my issues, so i am just going to type it all out and maybe it will help me to get it out of my system!
Does anyone else here suffer from painful intercourse?
I have PCOS and have also just been diagnosed with adenomyosis.
Basically my husband and i have only had proper intercourse a handful of times over a few years, due to the pain it causes me. We keep each other satisfied using other means but this is starting to become an issue. He wants to be like 'normal couples' and i would love that too but I just cannot handle the pain deep inside, and if i am in pain then there is no enjoyment at all. I am in tears just typing this out as I don't know what to do with myself! I am a mess!
I feel like if i can't satisfy him then i will lose him. He has been so supportive for years but I can't expect him to put up with me like this forever.
Have mentioned the pain to my gynae but he didn't seem to care. I feel so alone.

If you have been through this i would love to hear your stories. Is there any treatment? What can i do?

[STARRYSKY]

hi cooper,
a few years back I ended up in emergency after having sex with dp, all the doc said was that it was dispraeunia, I dont have pcos or anything like that but occasionally I still have the same problem and is always with deeper penetration, I have had a laparoscopy and a hysteroscopy to check for anything abnormal (apparantly ranging from ectopic pgncy,ovaarian cysts, endo etc...!) but they could find no explanation for me.
I would maybe suggest seeing another doc or gynae and explaining how this is affecting your life.
It is your god given right to have *normal* sex if you want it.
good luck.
xxx

[missya]

Hiya, My heart goes out to you, I have endometriosis and apart from painful periods from the age of 12, my first real encounter started at 21 with EXTREME pain during intercourse. I suffered for at least a year before I was brave enough to go to my doctor, who was a complete B***H. Anyway to cut a VERY long story short, many DRs and 2 years later I was diagnosed with endo. I don't know much about PCOS but the endo felt like a hot knife being insterted it was a nightmare. I had surgery (lap) and had severe endo throughout including my vagina. Once this was removed the problem went away, it can still be painful at times but nothing like it had previously been, but unfortunately mentally the pain is still there and this causes friction with my husband. I know exactly what you feel regarding the guilt and the pressure, I'm lucky my husband has been with me for 18years (since we were 17) and is wonderful but I felt like I was letting him down. I don't know how your conditions have been diagnosed as I'm not familiar with them but a lap to eliminate the possibility of endo might be your next step? I sincerely hope that you get some answers and relief soon. Just know that your not alone.

[elephant]

I too know all too well exactly what you are talking about! I was diagnosed with PCOS at 16 and Endo at 22. One of the reasons I knew there was something wrong was that I couldnt have sexual intercourse with out extreme pain, I can't even use tampons the pain is so bad! I had my first lap at 22 which confirmed my Endo and it was removed but the pain never really went away. I didnt say anything to anyone other than my DP for ages and we both came to the conclusion that something was still not right. I finally had my 2nd lap at 25 where my DR found no more endo and I was told that my pain was being caused by my nerves that were exposed from where my endo was removed. I have been through 2 different treatments since then which havent worked and am back to the doctor on the 11th Feb. Hopefully something works this time! My DP and I rarely have intercourse these days because I end up in so much pain, then I cry and feel like so inadequate as a woman and a partner! I too worry that one day he will leave because he can't handle it all anymore! He is so supportive but I know how horrible I feel about it so I know he wouldnt feel great either. I try to pretend that I am dealing with it all ok but sometimes I just feel like im fighting a losing battle!

Cooper what state are you in? My suggestion would be to go see a Gyn and talk to him/her about exactly what you are feeling. My Gyn has been awsome and so supportive its just sad that its is taking this long to fnd something that can help my pain! Its certainly not anything negative on her part its jus that each time you try a treatment you have to give it 3 or 4 months to see if its working so its a slow process! My fingers are crossed for my appt next monday!

Its so great and sad at the same time that there are other people out there that understand me!

[Amie]

Hi cooper,

Sorry to hear you are having troubles. I know that a relationship is more than just the sexual side of things but it is hard when things just aren't happening the way you would like them to.

As the other girls have said, try to find a Gynae whom you feel comfortable with and who gives you the understanding and info you need. It might take a few tries, but it's worth persisting until you find the right one for you.

From a purely "mechanical" point of view (sorry if TMI) there might little things you can do to ease things - make sure your bowels move well and if possible are empty before sex (full bowels can press forward, decreasing the dimensions of your vagina), try positions that don't place so much pressure on your vagina/uterus, also maybe see if different times of the month are less painful (our pain sensation is generally heightened just before and after our period).

Your husband seems really supportive, so keep communicating and keep trusting. I'm sure he wants you to be happy as much (probably moreso!) than he wants "normal sex". Make sure you tell him how you're feeling and stay in touch with where you're at.

xox

[Eryn]

Hi.
I didn't really know where to look for people that i could talk to...but this place seems welcoming...
I'm an 18 year old who was recently diagnosed with endo.
I'm finding it difficult to cope with some of the symptoms associated...
I, like Cooper, suffer from very painful intercourse.
Elephant mentioned that she can't use tampons because of the pain...I suffer this too.
Unfortunately, i also suffer from "irregular breakthrough bleeding". That is...i've been menstruating for the past 6 months, non-stop. I was wondering whether any other women have experienced this symptom?
I've been treated through a lap, and also tried different contraceptive pills. Recently i tried a progesterone implant in my arm. None of these things stopped the bleeding.
The implant did manage most of the pain...
I also lactate. I've been lactating for the past 3 months. My doctor and gyno don't seem to think that this could be caused by the endo. They thought it could have been a pituitary tumour, but the mri showed it wasn't...
I was again wondering if any other women suffer this symptom?
I know i am not pregnant, and i never have been.

Thank you...
x

[elephant]

Hiya Eryn

Im sorry to hear about all your endo problems and at 18 I can imagine you feel very alone and like no one else understands I too felt the same way when I was diagnosed at 22. I actually feel the same way now except when I come on here and im able to message others i dont feel so alone in my endo. Im glad you found this site also so we can all help each other through the troubles that we go through!
Im trying to stay positive about my endo and my dr appt on monday but the past week my pain has been bad! I could barely stand up and walk it was that bad and I had to have a day off work. Not the easiest thing to explain to your boss but i'm lucky my co workers are all aware of my endo and are super supportive! How about you guys? Ive always wondered how everyone deals with days off work due to their endo?

[Eryn]

I'm sorry to hear about your week. And your day off.
I don't work at the moment because i am too "unreliable".
I'm hoping to start work soon though because i've been having more good days lately.
My main issue was that i did my HSC last year. I missed a term and a half of school...
So absences were a huge issue for me.
And yeah, students and teachers weren't exactly supportive. For the months leading up to my diagnosis many people were whispering behind my back that i was faking it and all sorts of other nonsense.
A rumour went around that i was pregnant...
Mmm.
BUT, i managed to get a UAI of 90.80!

What sorts of treatment are you on?? Today i started a progesterone + estrogen contraceptive pill. I had the implanon removed a week ago...Hoping this helps.

Good luck with your dr's appointment!!

x

[elephant]

Im currently between treatments I stopped my last one because I was suffering from constant nausea. I am currently on Femoden which is a contraceptive pill but thats mostly to help with my PCOS which I have as well as my endo. I think that is also a progesterone and estrogen pill contraceptive.

My Dr is looking at Zoladex for my endo but I know this is not a "cure". I have heard from my Dr that there may be some clinical trials coming up that I may eligable for so that may be a step in the right direction.

Thanks for the well wishes about the appt will let you know how it goes!

x

[elephant]

Hey Eryn

I had my dr appt today and she suggested either the mirena or implanon and then im still waiting on the pain clinic appt where she is looking at either Gabapentin, Aromatase Inhibitors ar GnRH antagonists.
I said I wanted to think about it before I decided on the Implanon or Mirena. You said you had the implanon what was that like?

[Eryn]

Hey.
Yeah, i had the implanon. It didn't really work for me...
The pain was managed, but i had prologued bleeding the whole time.
I had it removed last week-ish and since then the bleeding has stopped.
I'm on day 4 of my pill and everything seems to be going good!
Fingers crossed it stays that way.

I haven't heard much about the other one...Mirena? What's that??

x

[elephant]

Mirena is an IUD my Dr puts it in under an anasthetic so there is no pain. Its inserted into the womb and is supposed to help with endo pain and is also a contraceptive. They last for 5 years and in some cases there is no periods at all. So no pain how nice would that be! Maybe ask your Dr next time you go?

x

[missya]

Hi, I' ve got the Mirena and have had it for three years now. My periods have finally stopped and it has helped my endo symptoms hugely. It was constant bleeding for the first 10 months and I nearly got it taken out but I stuck with it and am glad I did. It might be worth having a look at. cheers

[celine]

Eryn,
Have you ever been tested for PCOS? I was diagnosed in April with it after visiting the doctors because I was lactating. Good Luck!

[celine]

Hi Ladies
I just found this site and would like your opinion. I have PCOS as well as hyperprolactinemia-high levels of prolactin- which explains why I lactate. In December I woke up one night in EXTREME pain in my lower abdomen. It lasted about 45 mins. and slowly went away after having a BM. Last week I had to go to the ER because of the same problem. They did a vaginal ultrasound, x-rays, and blood work. They said there was nothing wrong with me. Today I got a phone call from my doctor saying she recieved the test result from my ER visit and she wants me to have a CAT scan done, there was "irregular thickness in the lining of my uterus". I've been doing some research and I think I may have ENDO. What do you think? Should I insist on a Laparoscopy also? On a side note I've also been experiencing chest pains as well as fluttering. I had test done and my cardiologist said they found nothing....what a surprise! Am I crazy? What do you think? Thanks!

[elephant]

I hope that you find some answers and some peace of mind hopefully we can be of some assistance with advice and by sharing our own stories!

I know how hard it is to go through tough times and not knowing when things will get better one day i'm sure it will for both of us!

I am currently 25 and was diagnosed with PCOS at 16 then I was diagnosed with ENDO at 22 I think? I had a lap then to remove my endo then another last may sadly I have not found a lot of relief as my Endo is now effecting my nerves from where my endo was removed resulting in the same pain as my endo and no amount of laps will make it go away. I had a Mirena inserted a couple of weeks ago to help deal with some of my pain but I think its too early to tell how well it will work. Im also waiting for my appt in June for the pain clinic to get some more help fingers crossed!!!

I too have a lot of pain which is often better after a BM this is because my endo was on my bowel as well as my uterus. I also have very painful intercourse and general pain pretty much daily.

It seems like your doctor is really keen to inverstigate which is great because from what I hear on this message board a lot of doctors dismiss womens pain and concern. I happened to get lucky and have an awsome Dr!

If you need any advice on docors etc please don't be afraid to ask I will be of help if I can!

Any more questions please ask remember nothing is too silly! I wish you all the luck in finding out what is going on with your condition.

x

[dusty]

hi ladies
a friend of mine suffered this really badly and it was really affecting her relationship with her DH. she eventually did an exploratory lap etc and everything was clear but they did find that her hymen had never been broken. that was one of the problems solved but the other one was psychological as she always associated intercourse with pain and hence was adverse to it and tensed up every time. she still had problems and needs to see a psychologist which has been very helpful in overcoming this and other anxiety problems.

i HTH
xx

[Eryn]

hi Celine.

No, i haven't been tested for PCOS...
I'm not really sure what it entails?

The pain that you've described sounds similar to one of the many types of pains that i have in relation to my endo. I also have chest pains, shortness of breath and arrhythmia. So it's possible that this is a symptom of endo, though i don't think it's recorded as such?

Update on my health: The latest contraceptive pill i've been on has controlled the bleeding. The pain has been less, though, still there. I'm still vomiting 5 or so times a day and my throat is hating it. Had an endoscopy and colonoscopy last week and they took some biopsies. Also had some more bloods taken. Turns out that i'm also b12 deficient. Had my first injection today. I'd recommend any of you that get blood tests regularly to request a b12 test, as apparently, many of the symptoms i have that were assumed to be related to my endo could also be related to the b12 problem. (Apart from the bleeding, lactating and painful sex of course.) Unfortunately, i've had to drop two of my classes at uni. I'm really dissapointed, but i just haven't been able to get there enough. I've already missed 50% of class and it's only week 4. Feeling pretty down about the whole situation.

HAPPY ENDOMETRIOSIS AWARENESS MONTH!!

If anyone has msn and would like to add me, please ask for my email. I'm more than happy to chat, compare notes, listen, anything. It's nice to have someone to talk to that understands. I've recently met a woman that shares the majority of my symptoms and she's been a wonderful friend. So, if any of you need to talk, let me know because i know how much it helps to be understood.

<3